ObjectivesSelf-monitoring the disease course is a relatively new concept in the management of patients with inflammatory rheumatic diseases (IRDs). The aims of this pilot study were to obtain patients’ experiences with online self-monitoring, to assess information about the agreement between the disease course assessed with patient-reported outcome measures (PROMs) and an objectively measured Disease Activity Score 28 (DAS28) by the rheumatologist, and to assess adherence to predetermined PROM frequency intervals.DesignObservational study using qualitative and quantitative methods.SettingThe rheumatology outpatient clinic of a teaching hospital in The Netherlands (secondary care).Participants47 patients with an IRD who regularly attended the outpatient clinic.MethodsPatients completed PROMs by using an online self-monitoring program. Their experiences regarding self-monitoring were qualitatively assessed through a focus group discussion and telephone interviews using a thematic analysis approach. Adherence to the predefined PROM frequency (completed PROM assessments within the predetermined frequency) and the agreement between the DAS28 course and PROM values (Rheumatoid Arthritis Disease Activity Index-5 and the Rheumatoid Arthritis Impact of Disease (RAID)) were quantitatively assessed using descriptives.ResultsForty-seven patients participated, most of them diagnosed with rheumatoid arthritis (n=38, 80.9%). Three themes were identified: knowledge about and insight into the disease (activity), patient–professional interaction and functionality of the program. Mean adherence to the predetermined PROM frequency was 68.1%. The RAID showed the best agreement with the DAS28 course. Mean participation time was 350 days.ConclusionPatients were predominantly positive about online self-monitoring. They indicated that they gained more knowledge about their disease, felt less dependent on the healthcare professional and valued the insight into their long-term disease course. Barriers were mostly related to technical factors. Patients were able to and willing to self-monitor their disease, which could contribute to a more efficient allocation of outpatient consultations in the future.

Patient-reported outcome measures (PROMs) are increasingly used in the assessment of patients with rheumatoid arthritis (RA). The aim of this study was to assess the construct validity and reproducibility of four types of PROMs (numerical rating scale (NRS), visual analogue scale (VAS), verbal rating scale (VRS), and Likert scale). In addition, patients' preference for one of these PROMs was measured. Patients with stable RA and no change in pain medication or steroid medication (n = 211) were asked to complete a questionnaire directly following, and 5 days after their outpatient visit. The questionnaire measured the validity of the PROMs in four domains (pain, fatigue, experienced disease activity, and general well-being). To assess construct validity, Pearson correlation coefficients were calculated using the Disease Activity Score-3. To assess reproducibility, intraclass correlation coefficients (ICCs) were calculated. Correlation coefficients between the different PROMs within each domain were compared. There were no differences regarding construct validity between the different PROM scale types. Regarding reproducibility, VAS and NRS scored better in the domains pain and experienced disease activity. Patients chose NRS as preferred measurement method, with the VAS in second place. The four scale types of PROMs appeared to be equally valid to assess pain, fatigue, experienced disease activity, and general well-being. VAS and NRS appeared to be more reliable for measuring pain and experienced disease activity. The patients favoured NRS. In combination with other practical advantages of NRS over VAS, we do advise the NRS as the preferred scale type for PROMs.

Background: Persistent phrenic nerve palsy (PNP) is an established complication of atrial fibrillation (AF) ablation, especially during cryoballoon and thoracoscopic ablation. Data on persistent PNP reversibility is limited because most patients recover <24 h. This study aims to investigate persistent PNP recovery, freedom of

BackgroundInflammatory rheumatic diseases (IRDs) such as Rheumatoid Arthritis (RA) and Psoriatic Arthritis (PsA) are characterised by a fluctuating disease course. Because of these fluctuations, the disease activity in between outpatient visits can be different from the disease activity objectively measured at outpatient visits. In order to capture the in between disease activity and to encourage patients to take an active role in their disease management, iMonitor1 was developed. This online self-monitoring tool allows patients to complete Patient-Reported Outcome Measures (PROMs) in order to get insight in their disease activity.ObjectivesTo gather patient experiences regarding online remote monitoring in IRDs and to provide recommendations in order to efficiently arrange and optimise self-monitoring.MethodsThis mixed-method study was conducted at a teaching hospital (Bernhoven, Uden, the Netherlands) from April 2016 until August 2017. Adult patients with RA or PsA were eligible to participate and were recruited by means of purposive sampling. Four instruction classes were organised in which patients received instructions regarding how to use iMonitor. Patients indicated which PROM(s) they preferred to complete (HAQ, RAID, and/or RADAI-5) and at which frequency (one-, two-, four-, six-, or eight-weeks). The system generated an alert email accordingly, adherence was determined by checking whether the PROM was completed within the time interval. Level of congruence between DAS28-scores and PROM-values (very poor – very good) were independently determined by two researchers (LR and PvR). Facilitators and barriers with regard to using iMonitor were collected by means of a focus group discussion and four telephone interviews.ResultsSeven patients with PsA and 32 with RA participated in this study. Most were female (n=23, 59%). Mean (±SD) age was 56.6 (10.7) years. RAID was chosen most often (29 times). Most patients (n=25) chose a four-week PROM-frequency. Mean adherence was 52.9%, patients with a one-week frequency were most compliant (73.8%). Regarding the congruence between DAS28 and PROMs, RAID scored best. Overall, patients were positive about iMonitor. They felt more aware about their disease and its consequences, felt supported in handling their disease, and gained more knowledge about their disease (activity). Based on our first experiences, recommendations for optimal self-monitoring are: 1) Patients need to be actively recruited 2) Tailored education (e.g. instruction class) is useful for some patients in order to get familiar with the program. 3) Patients need to get feedback from their healthcare provider regarding their outcomes. 4) Working with a stand-alone system such as iMonitor is not feasible, it should be integrated in an existing (hospital) system.ConclusionsSelf-monitoring is a first step towards personalised healthcare. Patients become more aware about their disease and gain more knowledge about their disease (activity), which can result in increased self-management. Future research should inve...